A few months ago I was going to be starting a new job and was quite nervous, but not for the typical reasons. I was told my office building did not have an elevator, and that I would be on the second floor. I'd been avoiding walking up stairs for 29 years, and I wasn't ready for that to change!
Let me back up a little ... 29 years to be exact. I was 2 days old and enjoying the warmth of my cozy incubator when it happened, when the lights in my muscles went out. I lost most of my muscle tone, and it was unclear why or what the prognosis would be.
Fast forward to today, I have a nonspecific muscular myopathy that causes weakness primarily in the proximal muscles (the ones closest to my shoulders and hips); secondarily, it causes more mild weakness everywhere else. However, you wouldn't know I had a disability by looking at me. People say I walk differently but I don't look disabled. I can walk upstairs, but I visibly struggle and this always worries people who are wondering if I'm OK. Then comes the awkward conversation that ends with embarrassment, pity or confusion. This is not the first impression you want to make at a new workplace.
So what to do? Do I take the job? Of course I take the job ... But how do I tell them that I have a disability before I even start? Will they be worried about liability? Will it affect my future at the company? How am I going to get up the stairs without crawling or creating awkward situations?
A pimp stick (aka, cane). Something I've never used before. Crawling and avoiding public stairs has suited me just fine for 29 years, but short of those two options, I thought maybe a cane would do the trick.
I still think some people seem uncomfortable, wondering why I use a cane (it's bright purple and polka dotted. Ya gotta go big or go home right?), wondering if I'm OK and me feeling weird for slowing them down, preferring them to go around me. They seem to think that might be rude; I think it would be a godsend. But many people no longer take notice, and I'm feeling more at ease with the stair thing.
While there are some communication issues to work out, I'm pretty happy with the solution. When I can't casually slip in an infomercial about my myopathy, the use of a walking aid does the talking for me. I'd prefer an elevator but for now, my purple pimp stick will have to do the trick.
Growing up in a world of stairs is hard. I say down with the stairs and in with the transporters! I'm a dreamer.


